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Titration Study Results
#51
RE: Titration Study Results
(04-22-2021, 05:05 PM)SarcasticDave94 Wrote: Yep that supposed titration was like a joke. Starting at 6, ending at 6 with apparently no changes. Even blind squirrels can see that isn't a titration.

OK that aside, what do you feel you lack as is? Are you feeling like your therapy is working OK? What do you want to improve?

I would like to sleep for more hours more soundly not tossing and turning all the time.  It would be nice to feel less tired during the day but I've kinda got used to that so if it doesn't change it's not the end of the world.

If the sleep apnea is causing my enlarged heart, I would like to stop that from getting worse.

To be honest before the sleep study I never thought I had a problem other than insomnia.  I wish I could go back to not knowing.
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#52
RE: Titration Study Results
(04-22-2021, 05:16 PM)hookedonstitch Wrote:
(04-22-2021, 05:05 PM)SarcasticDave94 Wrote: Yep that supposed titration was like a joke. Starting at 6, ending at 6 with apparently no changes. Even blind squirrels can see that isn't a titration.

OK that aside, what do you feel you lack as is? Are you feeling like your therapy is working OK? What do you want to improve?

I would like to sleep for more hours more soundly not tossing and turning all the time.  It would be nice to feel less tired during the day but I've kinda got used to that so if it doesn't change it's not the end of the world.

If the sleep apnea is causing my enlarged heart, I would like to stop that from getting worse.

To be honest before the sleep study I never thought I had a problem other than insomnia.  I wish I could go back to not knowing.
Therapy is awful but now that I know I have sleep apnea I have to do everything I can to adjust to treatment and this new way of sleep.
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#53
RE: Titration Study Results
"I would like to sleep for more hours more soundly not tossing and turning all the time.  It would be nice to feel less tired during the day"

you will sleep more soundly with less tossing & turning & fewer arousals & awakenings with treatment for plm.

and you're pap treatment for obstructive hypopnea prevalent in your initial sleep study will likely be more effective.
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#54
RE: Titration Study Results
Your treatment going forward needs to be two-fold.
First is the Sleep Apnea, I'm confident we at AB can help you along with the apnea portion.

Sleepless has experience with PLM. Most of the standard treatment for that is meds and vitamins. As indicated I'd ask the doc to check your Iron and B12 levels to see if they are deficient as a start. And check the supplements you are taking.
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#55
RE: Titration Study Results
yes, both are necessary. just suggesting dont make my mistake of wasting years trying to get there with pap only. pap helped(s) a lot but it's only about half the battle when plm is present. plm is exhausting & tends to mess with pap treatment.
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#56
RE: Titration Study Results
(04-22-2021, 05:05 PM)SarcasticDave94 Wrote: Yep that supposed titration was like a joke. Starting at 6, ending at 6 with apparently no changes. Even blind squirrels can see that isn't a titration.

OK that aside, what do you feel you lack as is? Are you feeling like your therapy is working OK? What do you want to improve?

I have to disagree with that. No apnea. No hypopnea. No RERA's. They tech did their job to the tee based on titration protocol which is to start at low pressure and increase as necessary to deal with these issues. 

The only thing less then desirable in data posted so far was some flow limitation which we are waiting for more data on to see if it improves at the new settings. Flow limits as most of us know are controversial as to whether they need to be treated or not. Considering her blood oxygen level remained very high the entire study and she had no RERA's I see no reason to think breathing issues are causing her symptoms as they aren't causing arousals or desaturations.

There are two things from the titration study that indicate some other potential issues though. 

The PLM numbers are significant but they were only associated with a handful of arousals. They are probably a symptom of something that may be causing the tiredness but I am guessing are not the cause of tiredness. 

The biggest thing that caught my eye is moderate alpha intrusion. That means awake style brain waves (alpha wave) are showing up in sleep. This is common in Fibromyalgia. In fact if you induce alpha wave intrusion on a persons sleep they can develop Fibromyalgia like symptoms (there are studies on this). This is likely the cause of tiredness imo. 

The comment about considering peripheral neuropathy for the PLM is interesting. Especially since there are recent findings that Fibromyalgia appears to be related to (if not caused by) small fiber neuropathy. 

Imo path forward is as follows.

Ask doctor to do Iron and B12 tests (if not already done).
Ask doctor to see sleep doctor/neurologist about the PLM and alpha wave intrusion. 
If you have other fibromyalgia like symptoms mention them and the relation of Fibromyalgia to alpha wave intrusion (not all doctors are aware of this). 
Post results so we can see if the increased pressure helps flow limitations and determine an ideal pressure range for you. 
Once we determine an ideal pressure range stick with it and let the machine work. 
Don't go down the CPAP rabbit hole so many people do chasing perfect breaths etc thinking it might solve all your symptoms. There is evidence of other issues at play so look into them before you consider trying to treat breathing further.
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#57
RE: Titration Study Results
(04-22-2021, 06:11 PM)sheepless Wrote: yes, both are necessary. just suggesting dont make my mistake of wasting years trying to get there with pap only. pap helped(s) a lot but it's only about half the battle when plm is present. plm is exhausting & tends to mess with pap treatment.

I am glad that my Dr. was willing to tell me that the PLM needs to be treated too.  I am taking Gabapentin 300 mg before bed and I'm noticing that I am feeling tired within an hour of taking it and I seem to sleep better (not as many arousals) that I am aware of.
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#58
RE: Titration Study Results
(04-22-2021, 05:52 PM)Gideon Wrote: Your treatment going forward needs to be two-fold.
First is the Sleep Apnea, I'm confident we at AB can help you along with the apnea portion.

Sleepless has experience with PLM.  Most of the standard treatment for that is meds and vitamins.  As indicated I'd ask the doc to check your Iron and B12 levels to see if they are deficient as a start.  And check the supplements you are taking.

My Iron is low and has been for as long as I can remember.  I have tried many times to raise the # with supplements but give up because of all the side effects.

Bloodwork was last done early February and is being repeated at the beginning of June.

Vitamin B12 - 247
Ferritin - 29
Vitamin D - 61
Hemoglobin - 106

I am taking Vitamin B12 (5000mcg), Vitamin D (3,000 IU) and Feramax 150 x 2 daily. 

The Sleep Dr. wants me to take Gabapentin until my Iron levels are higher.
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#59
RE: Titration Study Results
(04-22-2021, 06:40 PM)Geer1 Wrote:
(04-22-2021, 05:05 PM)SarcasticDave94 Wrote: Yep that supposed titration was like a joke. Starting at 6, ending at 6 with apparently no changes. Even blind squirrels can see that isn't a titration.

OK that aside, what do you feel you lack as is? Are you feeling like your therapy is working OK? What do you want to improve?

I have to disagree with that. No apnea. No hypopnea. No RERA's. They tech did their job to the tee based on titration protocol which is to start at low pressure and increase as necessary to deal with these issues. 

The only thing less then desirable in data posted so far was some flow limitation which we are waiting for more data on to see if it improves at the new settings. Flow limits as most of us know are controversial as to whether they need to be treated or not. Considering her blood oxygen level remained very high the entire study and she had no RERA's I see no reason to think breathing issues are causing her symptoms as they aren't causing arousals or desaturations.

There are two things from the titration study that indicate some other potential issues though. 

The PLM numbers are significant but they were only associated with a handful of arousals. They are probably a symptom of something that may be causing the tiredness but I am guessing are not the cause of tiredness. 

The biggest thing that caught my eye is moderate alpha intrusion. That means awake style brain waves (alpha wave) are showing up in sleep. This is common in Fibromyalgia. In fact if you induce alpha wave intrusion on a persons sleep they can develop Fibromyalgia like symptoms (there are studies on this). This is likely the cause of tiredness imo. 

The comment about considering peripheral neuropathy for the PLM is interesting. Especially since there are recent findings that Fibromyalgia appears to be related to (if not caused by) small fiber neuropathy. 

Imo path forward is as follows.

Ask doctor to do Iron and B12 tests (if not already done).
Ask doctor to see sleep doctor/neurologist about the PLM and alpha wave intrusion. 
If you have other fibromyalgia like symptoms mention them and the relation of Fibromyalgia to alpha wave intrusion (not all doctors are aware of this). 
Post results so we can see if the increased pressure helps flow limitations and determine an ideal pressure range for you. 
Once we determine an ideal pressure range stick with it and let the machine work. 
Don't go down the CPAP rabbit hole so many people do chasing perfect breaths etc thinking it might solve all your symptoms. There is evidence of other issues at play so look into them before you consider trying to treat breathing further.

Iron and B12 tests have been done and both are low.  I am taking supplements.  I looked up Fibro and I have very few of the symptoms (migraines) is the one that stood out but I have had very few migraines the past few years and I've had on and off again migraines for about 30 years.  There's no joint pain.  The Sleep Dr. didn't even mention Fibro to me.

I will continue with my pressure trial and post in a few days.
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#60
RE: Titration Study Results
(04-22-2021, 08:11 PM)hookedonstitch Wrote:
(04-22-2021, 06:40 PM)Geer1 Wrote:
(04-22-2021, 05:05 PM)SarcasticDave94 Wrote: Yep that supposed titration was like a joke. Starting at 6, ending at 6 with apparently no changes. Even blind squirrels can see that isn't a titration.

OK that aside, what do you feel you lack as is? Are you feeling like your therapy is working OK? What do you want to improve?

I have to disagree with that. No apnea. No hypopnea. No RERA's. They tech did their job to the tee based on titration protocol which is to start at low pressure and increase as necessary to deal with these issues. 

The only thing less then desirable in data posted so far was some flow limitation which we are waiting for more data on to see if it improves at the new settings. Flow limits as most of us know are controversial as to whether they need to be treated or not. Considering her blood oxygen level remained very high the entire study and she had no RERA's I see no reason to think breathing issues are causing her symptoms as they aren't causing arousals or desaturations.

There are two things from the titration study that indicate some other potential issues though. 

The PLM numbers are significant but they were only associated with a handful of arousals. They are probably a symptom of something that may be causing the tiredness but I am guessing are not the cause of tiredness. 

The biggest thing that caught my eye is moderate alpha intrusion. That means awake style brain waves (alpha wave) are showing up in sleep. This is common in Fibromyalgia. In fact if you induce alpha wave intrusion on a persons sleep they can develop Fibromyalgia like symptoms (there are studies on this). This is likely the cause of tiredness imo. 

The comment about considering peripheral neuropathy for the PLM is interesting. Especially since there are recent findings that Fibromyalgia appears to be related to (if not caused by) small fiber neuropathy. 

Imo path forward is as follows.

Ask doctor to do Iron and B12 tests (if not already done).
Ask doctor to see sleep doctor/neurologist about the PLM and alpha wave intrusion. 
If you have other fibromyalgia like symptoms mention them and the relation of Fibromyalgia to alpha wave intrusion (not all doctors are aware of this). 
Post results so we can see if the increased pressure helps flow limitations and determine an ideal pressure range for you. 
Once we determine an ideal pressure range stick with it and let the machine work. 
Don't go down the CPAP rabbit hole so many people do chasing perfect breaths etc thinking it might solve all your symptoms. There is evidence of other issues at play so look into them before you consider trying to treat breathing further.

Iron and B12 tests have been done and both are low.  I am taking supplements.  I looked up Fibro and I have very few of the symptoms (migraines) is the one that stood out but I have had very few migraines the past few years and I've had on and off again migraines for about 30 years.  There's no joint pain.  The Sleep Dr. didn't even mention Fibro to me.

I will continue with my pressure trial and post in a few days.

Unless the issues I am having with breathlessness upon exercise and the wheezing in my chest is Fibro?  I will bring it up with my Family Dr. at the next appointment.
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